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A long, slow loss

My mom was one of those women who seemed to know everyone. She honestly wanted to connect with other people, really wanted to be a part of other people’s lives. She laughed a lot, held doors for strangers, planted more flowers than most greenhouses, and never forgot a birthday or anniversary.

And I know this shouldn’t matter, but Mom was beautiful. She was beautiful in all of those dreamy and intangible ways that all moms are, but she was also just really pretty. Once, after a few drinks, a friend of mine told me he’d always thought my mom was “super-hot.” That might sound a little strange to you, but to me, it was just a funny little reminder that my mom was indeed still looking good, even as she approached 50.

My mom, who never felt pretty or worthy or smart as a child or young woman, had finally come into herself later in life. She went out of her way to be kind, try new things, and continue to learn and grow every day. She and my dad were a two-person team that could and did take on the world. Which is why watching cancer take hold of her was devastating in so many ways.

It’s pretty common knowledge that chemo makes you lose your hair. So we were sad, but prepared as mom’s beautiful blonde locks started to come out in clumps. I can’t remember who suggested it, but we had a head shaving party. Mom’s best friend Shirley and my best friend Alice came over to celebrate and support Mom as we buzzed off what was left of her hair.

I remember Mom crying as we finished, even though she tried so hard not to. I cried too, not realizing that this was the first of many pieces of my mom that would slip away. We tried to have fun when we went wig shopping, and she humored Dad and me by trying on a few racy and brightly-colored styles. But, we all knew we were there because she was sick, because things were not going the way we had hoped.

What many people don’t know about chemo is that it can also make you lose your short term memory. Mom had a stem cell transplant, which involved abnormally heavy doses of chemo, so her body and brain had to take an incredible beating. There’s a name for what happened to her -“chemo brain.” Doctors actually use that term to describe it.

Mom would walk into the living room, and forget what she had wanted in there. She wasn’t cooking anymore, since she was so weak. This was a blessing in disguise, since she could easily have forgotten that the stove or oven was on, and burned the house down. She started keeping tiny notepads on end tables, in the car, in her purse, so she could write things down before they slipped away. Learning new things was out of the question at this point. Mom, who once had a sharper memory than any of us, couldn’t remember to brush her teeth without one of us reminding her.

When it came back for what seemed like the tenth time, cancer played the cruelest trick of all. It stole my mom’s beauty. She had to have surgery to remove yet another tumor that was wrapped around her brainstem. When I was able to see her in the recovery room, I almost couldn’t believe that was my mom. Her whole face was swollen in a way that seemed unnatural. Her head was misshapen from the surgery, and was bandaged like a zombie. After that surgery, her eyes never looked quite the same, like it was hard to get one of them to open with the other. And her face remained swollen, as a constant reminder that my beautiful and brave Mom had been through things that people are not supposed to go through.

When Mom was really sick, I would help her take baths. It may sound like a sweet mother-daughter event, this trading of places, and in some ways, it was. But, it was also awful to know that my mom, who used to braid my hair, spend hours in her garden, and make my Halloween costumes, couldn’t even hold a washcloth.

My brother Aaron had cared for her 24 hours a day for months while she was undergoing treatment at Duke, and I still can’t bring myself to think of what that must have been like for him, watching Mom grow so weak and so small each day.

And if that is unthinkable to me, what Dad went through goes somehow a step farther. Mom, who had been his wife, his partner, and the mother to his children, was now someone who needed his complete care. The woman who chaperoned countless school field trips, went back to college when she was 40, and watched Cirque De Soleil in San Francisco was now reduced to a woman who had cancer, then didn’t, then did, over and over and over again.

When Mom was first diagnosed, she was given just a short time to live. With some amazing doctors, we got four more years. I take comfort in knowing that in that time, we all had a chance to have every conversation we needed to have with Mom, and to say goodbye exactly the way we wanted to.

I’ve met countless people who have told me how much they wish they’d had “a little more time” before their loved one died. I understand that, and my heart goes out to them, but with my time came some things that I am sad and ashamed to admit. Like the fact that when I think of my mom, I can usually only picture her in the last few years, when she looked like “Cancer Mom” instead of the mom I grew up with.

And as a then 29-year old, I can’t pretend that I didn’t feel the balance of the universe shift as I helped to change my frail mother’s diaper. It wasn’t that I didn’t want to do it, just that I just didn’t want to believe that my mom could be that sick. But time gave me those memories, and they are ones I will sadly keep forever.

It’s a terrible thing when someone you love dies slowly, losing little bits of themselves along the way. And it is a terrible thing to have those memories taking up the space that should be filled with birthday parties, family gatherings, and humorously ill-constructed science fair projects. In the years that Mom was sick I lost her piece by piece, little by little, until the final loss.

I didn’t realize it then, but I can see now that I was grieving the whole time, learning to live with each new loss. I guess you could say it gave me a chance to slowly come to terms with the fact that mom would be dying, and that I had the opportunity to use what time we had left wisely.

But if I were to be honest, I would say that sometimes I feel cheated. I feel angry that my lingering memories are of Mom sick, bald, and forgetful. I feel sad to think that Dad and Aaron had to transition from husband and son to nurse and caretaker. And, I am baffled by a God or universe that would allow Mom to be sick for so many years, to fight so hard, and still die in the end.

Many people question if it is easier to lose someone quickly or slowly. I wouldn’t be able to speak on that, because there’s no good way to lose someone you love. I am thankful for the many magical moments Mom shared with me, Dad, Aaron, and everyone else in those final years. I am beyond grateful to have had the chance to tell her how much I loved her, how much her life had meant, and how much I saw of her in me. But still, having her be sick for so long took a toll on me, on everyone, and I can’t pretend that it didn’t change us all.

In the end, I have to hope that it changed us for the better, made us more aware of each moment we have with the people in our lives. And on a good day, on most days, I believe that it has, because Mom would have believed that. She always saw the possibilities in every challenge, and I see that in myself. In the end, when cancer had slowly stolen so many pieces of her, that was something it could not take, something so strong that it outlived even her.

Thanks for writing this. We talked about it at Wren’s place but reading it kinda solidifies how awesome you are! I’m doing the same thing for my mom right now… have been the majority of my life (she has MS and is bedridden). I too worry that I will only have memories of the frustrating times, the sick times, the forgetful times. I look at pictures of her healthy life constantly so I don’t lose perspective.

Very very beautifully written. My three greatest losses–my baseball coach and mentor, my best friend, and my own mother–were all very sudden and very quick losses. Like you, I often asked if it’s better to lose someone quickly or over time. You’re right, there is no sufficient answer to that quandry, but having never experienced a loss like yours, I only could speak to one experience. Thank you so much for sharing. Thank you so much for giving a poignant perspective to your loss.

I have had breast cancer twice now and am 57. I have already made the decision NOT to ever have treatments that will make my loved ones go throught what you did. we talk about death as it is part of life, but we have accepted Jesus as our savior and do not fear death. We know we will be reunited one day and so the separation is only temporary. As a pastors wife, we have seen many people go through similar things that you have described. Both of my parents died in the same year and the memories of it all is easing and the memories of them BEFORE are returning….I will pray that good memories will return for you and your your loved ones too.

Dear Alisha, I’m always amazed at how well you can articulate your thoughts in writing. This article touched me on so many levels. My dearest friend and “second mom” died from cancer … and my first memory of her when I hear her name or think of her is not her beautiful, spirited, spit fire self. I’m deeply sorry your memories of your mom can be like that too. And Alisha, thank you for writing this … for saying the things we don’t always say. I’ve experienced the death of loved ones both suddenly and after long illnesses … both are awful for such different reasons. You so eloquently talk about the awful reasons of the long illnesses. The best piece of your mom is most definitely how you keep her beautiful spirit alive. Thank you again for writing this.

Having lost my father suddenly and then three months later losing my best friend’s father after three years of suffering from cancer, I agree with you that “there’s no good way to lose someone you love”. This was beautifully written! Your mother would be so proud of the woman she raised. Thank you for sharing.

My Dad was sick for a long time before he died, and in many ways I, too, grieved little losses along the way. Dad suffered from CHF, and he progressed from a pretty active, jovial guy to a man who struggled to breathe, was always tired, looked swollen pretty much all over, and had a really kind of pessimistic outlook on life. All of this stuff was hard for me, as was watching my Dad become someone who rarely left the house…not because he didn’t want to, but because it was so difficult for him to move around and breathe it just didn’t seem worth it. Those things were hard, but the hardest thing for me was the time I came home from college to a quiet house.
Dad was an accomplished musician, and when he wasn’t able to feel his fingers anymore, he stopped playing the clarinet. This was the hardest change.
The week before he died, my Mom and Dad came to visit me in the Adirondacks. My Dad refused to fly, so they made the 2000-mile journey in the van. It was the best I had seen Dad look in a very long time. He was in great spirits. He was the jovial guy I remembered from my childhood. I spent a few days with my folks, then they visited a few places before making the journey home. When I didn’t hear from my folks, I started to get worried that something had happened and they hadn’t made it home. I got a call from my Mom that they had made it home, but Dad wasn’t “feeling very well.” The next day, I got a call that the ambulance had come to take him to the hospital, that he wasn’t doing very well but that he was stable. It was maybe 4 hours later that Mom called again to tell me that he had been admitted to ICU. The next morning, he was gone.

That last week, I thought I had all the time in the world. He looked great, he was happy, things were good. I never dreamed he would be gone a week later. Losing my Dad so suddenly after spending nearly a decade losing him little by little was the hardest thing I’ve ever had to go through. And there is no easy way to lose somebody you love. Quickly or slowly, it’s always incredibly painful. For my experience, the quick part was the most painful for us, but was probably a blessing for him.

Thank you for sharing your story, Alisha. And thank you for giving me an opportunity to share mine.

Beautiful! I always tell people that it doesn’t matter how you lose someone – slow, fast, or in between – all hurt. It also does not matter who you lost – they all suck. Preparation can be painstakingly hard emotionally. The important things to focus on is they will always be with you in their way no matter what, and they are okay. It’s those of us left behind that have to pick up the pieces and move forward.

Thank you for sharing. My dad had cancer for 8 years on and off again until the last time. He would come in to say goodnight to me and would keep coming in 4 times a night. i would tell him he already gave me a kiss and he would say i did when. 🙁 I miss him

Alisha,
Thank you for sharing your story. It was beautifully written and the love you and your family share shines through. I lost my first husband suddenly in a terrorist bombing 22 years ago, my 16 year old son to suicide only 4 months ago and both my parents to long battles with cancer. You are so right that there is simply no good way to lose someone we love. It is just plain hard, no matter what.

Take good care of yourself and know your mother lives on in you and in all the beautiful things around you.

I can certainly relate to Alisha’s story as I watched my son die, first a year at a time, then a month, then a day and then by the hour. It is so overpowering that the ‘death’ life overpowers the ‘before death’ life. I have read that there is anticipatory grief that we experience under these circumstances. It is still shocking to the body when one sees their loved one die over a long period of time. I can only imagine how more shocking it would be with a sudden death. Irregardless, it is very, very painful. It has now been 18 yrs since my son died and somedays I can ‘feel the grief’ as if it was yesterday. It is a powerful experience that we are able to go through and survive. But it is also beautiful honor to be at ones bedside as one transitions to a new life. It does add a dimension to our life that one could never imagine.

beautiful, my dad died of cancer, he had cancer removed for about 10 years, they originally gave him 5 years, but he was healthy almost all of those years besides when he would have surgeries to remove another melanoma spot. In the final months he was with us it was terrible, i remember those times on hospice, he couldnt even get out of bed, we had to help him, and then he had to wear a diaper as well, it was so surreal watching my father who has always been my strengh dying and weak himself, and watching his mind go as he was on many drugs and his body was preparing to die, i remember seeing the signs, it was hard to believe it, the final morning was the final breathing sign of labored breathing, it was terrible but somehow i was ready the last 2 months i had prepared slowly letting go, i was just glad he was out of suffereing, but I too stil remember those times, i try to think of the good times, but the bad sick times are part of it too though

Alisha,
This was such a beautiful way to write about something so terrible. Thank you for saying what we have gone through so well. Losing someone over a long period of time while they suffer is so incredibly painful…but so is losing them suddenly and without any warning. Our losses have helped make us the people we are now, and this is what I remind myself when the grief becomes overwhelming.

I have always felt like the loss would be easier on those remaining if you had the time to say goodbye rather than a sudden loss because I lost my dad when I was 12 in a car accident. It was awful. Now I understand and agree that there is no good way to lose someone. Thank you for helping me to understand.

Alisha thank you for sharing your story in such a beautiful way. I can appreciate your honesty. I lost my mother and very best friend when I was 30 after 9 months of intensive chemo and brain surgery for a stage 4 gleoblastoma. I watched as she became a fighter, yet I was always looking for signs of the Mom I knew. When I was 40 I lost my husband and very best friend suddenly from a drug reaction and cardiac arrest. Two different loses but in the end two loses that will affect every moment of every day. It helps that since my husbands death my son and I continue to find “heart rocks” along our path on a frequent basis. Literally we find rocks with different imperfections that are shaped like hearts that remind us of the love that will always be in our hearts. I’d like to share a poem that my son wrote when he was 11 years old.
A HEART ROCK POEM
OUR HEART BREAKS
OUR BODY ACHES
WE FEEL THE LOVE FROM ABOVE
THIS IS A SIGN FROM ME TO YOU
I KNOW THE PAIN YOUR FEELING TOO!
SOMETIMES YOU MAY FEEL SAD AND BLUE
YOUR HEART MAY BREAK YOUR BODY ACHE
BUT YOU CAN ALWAYS FEEL THE LOVE FROM ABOVE.
TAKE THIS AS A REMINDER OF HOW MUCH KINDER YOU ARE BECAUSE OF THEM.
AND THOUGH YOUR HEART IS BROKEN
YOU FEEL THEIR LOVE UNSPOKEN.
THIS HEART IS TO GUIDE YOU THROUGH ALL YOUR HARD TIMES AND REMIND YOU OF ALL THE LOVE WE HAVE TO SHARE,
SO TAKE SOME OF OURS AND KNOW THAT WE CARE.
THIS ROCK IS FOR YOU WHEN YOUR FEELING BLUE,
SO YOU KNOW THE LOVE THEY SHOW
EVEN NOW
SOMEWAY, SOMEHOW.

Wow. It definitely was a tear-jerker. You write so honestly and so beautifully. Thank you for sharing this Alisha. Have you read “The Shack”? If not, you have to. It answers some of your questions here. I finished it a month ago and I keep thinking about it as time goes on. You are always in my thoughts and prayers. Love you!

Well Alisha, What can one say. You certainly say it beautifully. I think the slow death must make grief so much more real. There must be feelings of wishing you could have done more or something and not being able to must hurt. Fast death gives you no sense other than maybe some people wish they had gone at the same time. I am sure the age of the surviors at the time of the death has a lot to do with future grief. Is there types of Grief? How will we ever know? It is all a subject for discussion. To each his own I guess. Thanks for your ability to share your feelings so well. Chuck

An amazing piece – but I would expect no less from you Alisha. A friend of mine is going through cancer with his young daughter, and we pray everyday that the dark days lead to a light at the end of treatment. Cancer is like that sometimes I guess — you have bad memories mixed with good ones too. Having experienced a sudden loss in the death of my husband, I agree that no matter how you lose someone it sucks. But what I wouldn’t give to have even one more day…

I’ve never lost someone suddenly, and I kind of fear it–the here today, gone tomorrow. Like you, I experienced the loss of my mother slowly–with the diagnosis first, then the chemo effects, then the cancer metastasizing, then placing her in Hospice care and, then, 4 days after her 48th birthday, her death. Like you, I’m angry that I have those memories of her and they are fresher than the ones I love (and I worry about this more so with my brother who was 11 when she died). I try very hard to tell him stories and anecdotes from before cancer, to keep her smile and radiance and fun attitude alive for him–and me.

Such a powerful and well-written communication, thanks for sharing. One year ago on 4/6, I said a final good night to my soul mate, best friend and husband Stephen, who was a true warrior after almost four years battling Stage IV melanoma. I had no idea his time was so near and felt as sad and shocked when I woke up the next morning and found him no longer breathing, as if I had lost him suddenly. After four years, there were still things I had wanted to say! It is a strange feeling to experience both types of losses with the same person.

Alisha-thank you so much for writing this. I recently lost my Mother on 4/15/11 to cancer. She was diagnosed just 10 weeks prior to her death. It was the fastest and slowest 10 weeks of my life. My wedding is set for 6/10/11, and I still can’t believe that she physically won’t be there. So far, grieving is like a ball of yarn. Some days I get a lot done, and have a nice ball going, and then all of a sudden I drop the ball and everything unravels and I have to start again. It helps to know I am not alone. So sorry for your loss.

Alisha,
Beautifully written piece. Your mom, my husband – so much similar – different types of cancer, but the on/off treatment – Dave fought for 7 yrs straight – first diagnosed in ’97, then had a reprieve for about 4 years, then 2002 rediagnosed – unsuccessful stem cell in 2003, constant on/off again treatment until he died Christmas eve 2010.

So much of what you said hit home – our sons were young through out – though I know the emotional toll of dad feeling good, then again having to get “juiced” as we called it was a seesaw for them.

You hit on it – each little thing I grieved, I also don’t know which is better fast or slow. People often think when it is slow you have a chance to say/do the important things. Yet you really don’t, we thought we had about 3-4 months to “take care of things”, in reality, we had about exactly 1 month so things did not get done. In the end, the cruelest part was he couldn’t speak – so his chance to say things, things the boys and I needed to hear and be told, even though we knew them, we were cheated of.
He fought so hard, for so long, I also question how after all that, a benevolent God could cheat us of the very simple things we needed to hear from him, and he was trying so hard to tell us.

Beautifully written piece and tribute not only to your mother, but you, your brother and your father.

My father died yesterday on the 24th January 2012, also my 31st birthday. He had metastatic pancreatic cancer, he battled for 7months and we; my mother and sister were with him as much as we vould be, providing him with 24 hour care. He is my hero, the most amazing father i could ever wish for, his main fault? Protecting us too much. Everyone who speaks of him has only kind words to say. The pain is intense and I feel like a little girl again. The bottom has literally fallen out of our world. Dad died at home, an hour and a half after a beautiful rendition of half of ‘happy birthday’ before he ran out of puff. I went off to work, had a call from mum to come home. it was the middle of rush hour and I was 5mins to late. My friend tells me its because he didn’t want me to see him, he was a proud man. We were given lots of time to tell him we loved him, to see him waste away was heartbreaking, but we got to tell him everything and that really helps. This morning we looked out of his bedroom window and saw lots of baby bluetits, one of dads favourite birds feeding ftom his beloved bird table, exactly 24 hours since he fell asleep, we have never see so many! we cried, but we know he is there, looking after us. I imagine him to be walking his beloved fields and sending us his love. Miss you dad, always xxx

I lost my dad on 11/22/11 to esophogeal cancer. I was in my first quarter of college when he started to go down hill fast, i left the quater early before finals b/c i knew i couldnt do them at that time b/c of emotions being so high. My dad served this country in the vietnam war, i still remember what he said when he first got diagnosed, he said “im not going to mope around feeling sorry for myself, i dont want anyone else to either”. I am still dealing with haveing to watch my dad wast away like he did and i agree going through something like this changes you as a person. For anyone else going though this Take every day one at a time and dont take life forgranted it can be taken to soon. Tell your family and friends that you love them b/c you might not get the chance tomorrow.

Thank you so much. I am in the midst of this experience, except with my husband. He had his first malignant brain tumor in Jan of 2005. His second was removed in March of 2009. He has now decided to stop chemotherapy, and we are waiting for his MRI on the 26th to see if what showed up as a “whisp” last year has grown. I believe it’s unrealistic to think that it hasn’t.

I alternate between being ok, really depressed, frightened, and angry. Angry at him for stopping the treatment, angry at God for allowing this to happen, angry at myself for the time I’ve wasted.

My husband is still alive, but my lover is gone. What’s left is someone that I’m constantly worried about. And every one of those time marking occasions, I ask my self “Will he be here for the next one?”

What a beautifully written blog! And exactly how I feel about losing my mother a little over a month ago. She also lost a battle with cancer and survived a little over a year longer than anyone expected. This overwhelming grief has taken over every second on my day, and it was very comforting to see someone else talking about their same grief. I hope that someday soon I can also express my feelings as eloquently, but first I think I need to come to term with my feelings in order to express them. I am not yet there.

Thank you for telling such a beautiful story, Alisha. It helps me sort through complex emotions as I watch a brilliant friend emerge from a 5-week coma. His memory was affected by swelling on the brain. The wait for him to come out of the coma was a marathon run for his family, but the most challenging days and years may lie ahead.

Many lines in your post touched me, but I think I identified with this one the most: “In the years that Mom was sick I lost her piece by piece, little by little, until the final loss.” My father had a different type of cancer than your mother, and his death, though expected, was still sudden because he hadn’t been very sick up until he was hospitalized. But I know what you mean. The chemo exhausted him, gave him chemo brain, took all the muscle tone in his legs, caused painful neuropathy in his legs and feet. He was mobile (somewhat) at the time of his death, and he was clear mentally, but still, he was fading. And that is a horrible thing to witness. I’m sorry you had to go through it. But I take some comfort in knowing that I am not alone, and that there are people out there who understand that grieving isn’t just about accepting platitudes and pretending that everything is fine.

Wow. I get your pain. My mom did not have cancer but i watched her slip away and our roles switched. It was the most challenging task of my life, and the most horrific. Witnessing someone take their last breath is not beautiful. Its ugly and its cruel.
My mom was 87 and she had congestive heart failure. I am 52. She was much more than my mom. She was my best friend. Each day without her is……..is………just very hard.
God bless you.d
Helene

It’s a terrible thing when someone you love dies slowly, losing little bits of themselves along the way. And it is a terrible thing to have those memories taking up the space that should be filled with birthday parties, family gatherings, and humorously ill-constructed science fair projects. In the years that Mom was sick I lost her piece by piece, little by little, until the final loss.
I didn’t realize it then, but I can see now that I was grieving the whole time, learning to live with each new loss. = So true and beautifully written.

My beautiful mam battled cancer for 24 years with such courage and dignity. Each time we got through it until it finally claimed her last november. I know it’s not my fault but I feel as if I let her down, I couldn’t make her better this time. I sat with her day and night in the hospice. It makes me mad when people say “you got to say goodbye”, we never had that conversation, yes we both knew it was coming and I had to talk to her on my birthday, telling her it was ok to let go that she and I would never be apart. I held her hand as she took her final breath. My heart is broken, I have such pain. Mam was my best friend, my soulmate and the love of my life. I know she would want me to be happy but I also know she’ll be feeling the separation anxiety too. I will hold her in my heart until the day when I see her face again.

Hello Grief provides information and resources about grief in order to break through the current culture of avoidance
that surrounds death and loss. Instead, Hello Grief addresses bereavement head-on for those who are helping others cope,
as well as those who need support on their own personal journey with grief. In a world that doesn't get it, we do.

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